Abstract
BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford and the COST Action CHIP ME gathered clinicians, researchers, ethicists, lawyers, research participants and patient representatives to discuss experiences of using Dynamic Consent, and how such use may facilitate the conduct of specific research tasks. The data collected during the workshop were analysed using a content analysis approach.ResultsDynamic Consent can provide practical, sustainable and future-proof solutions to challenges related to participant recruitment, the attainment of informed consent, participant retention and consent management, and may bring economic efficiencies.ConclusionsDynamic Consent offers opportunities for ongoing communication between researchers and research participants that can positively impact research. Dynamic Consent supports inter-sector, cross-border approaches and large scale data-sharing. Whilst it is relatively easy to set up and maintain, its implementation will require that researchers re-consider their relationship with research participants and adopt new procedures.
Highlights
Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out
The key purpose of this paper is to explore how Dynamic Consent can help researchers address the challenges encountered when inviting individuals to participate in research and following them up over time in a continuously changing environment
Participant recruitment A Dynamic Consent platform can be set up to provide most of the information about a research project online in a user-friendly and standardised way across research sites
Summary
Innovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Biomedical research requires the continuous collection of biological samples, health and outcome data from representative samples of patients. Recruiting enough participants, or reaching out to the population of interest, is often difficult [3, 4] This is true in genetic research which experiences lower recruitment rates than other types of biomedical. Participant recruitment may be hindered by a lack of manpower or funding to organise large information-giving and enrolment campaigns. It may be inhibited by clinical staff’s limited familiarity or understanding of research objectives and fears that it will interrupt patient care [6]. Patients may not understand the objectives of the research, may not be willing or able to travel to the research centre [7], or may not speak the language used by researchers [8]
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